When Will had his six-month checkup, the doctor noticed his head circumfrence was at the 90th percentile, which was quite large compared to his height and weight (5% and 25%, respectively). She debated sending him for a CT scan then, but decided we should just keep a close eye on it sice he was still following the “normal” curve on the growth chart.
So today I took him in for a follow-up (half-way between his 6 & 9 month checkups), and his head is now way above normal growth. So the doctor has ordered him to have a CT scan to check for hydrocephalus, or “water on the brain.”
I’m just sitting here waiting for the scheduling people to call, reading about the condition and totally freaking out. He doesn’t seem to have most of the other conditions, such as vomiting or irritability, but there is one that rings a little bell, which is difficulty eating. Not that he doesn’t eat, but I’ve sometimes thought that he hasn’t ever been as interested in his bottles as I’ve known other babies to be. Never thought that much about it until now.
If he does have it, it means all kind of scary things like “surgery” and “brain damage” and “developmental disabilities.”
My thoughts are with you - waiting has to be the most awful thing. I wish you strength as you process what you hear and figure out what happens after that…
I wish you the best of luck and educating yourself- although scary- is the most important thing, with the caveat that the internet generally holds and presents only worst case scenarios. You will do well and so will your son!
Kids w/my disability (Spina Bifida) tend to have hydrocephalus. Many times a shunt is punt in their skull, to drain off the fluid. My shunt is the original shunt (never revised), unlike most of my friends with Spina Bifida. Shunt surgery, IMO, isn’t as scary as it sounds.
I wish to emphasize that these days most cases of hydrocephalus are treatable (see comments about brain shunts by etv78) and it is entirely possible for a child with this condition to grow up with normal or above normal intelligence in today’s world.
If that is indeed what your baby has, well, it has been caught early, before major symptoms appear. That’s a very good thing, and steps can be taken to avoid problems. The prospect of surgery can be scary, but the outcomes these days are usually good.
Don’t let *anyone *tell you your child is doomed, frighten you with horrible stories, or tell you that your child is now brain damaged or retarded. As far as you know, none of these apply. With proper medical attention NONE of them will EVER apply.
Hopefully this is only a horse, not a zebra. Wishing you the best outcome. As a parent who has had to wait for results before (in my case, genetic tests to find out if either or both of my kids had the condition that killed their father at 45; neither did, as it turned out) I know full well the special level of hell that sort of thing can put us in.
I recall reading once that Stephen King and his wife had a similar scare with one of their sons and it turned out that he simply had a larger than typical head. Hoping this is the case here.
And this. I had come around to this mindset while waiting on my kids’ results…if caught early and treated, their possible condition currently has an average life expectancy of 60 plus yrs (and who knows what advances would come in the meantime, I told myself). Better to know as soon as possible and deal with it in such a situation. But still hoping you don’t have to deal with it.
They diagnosed my son with hydrocephalus at about the same age. I was devastated, so I know exactly what you are feeling right now. They were in the process of scheduling him for shunt placement surgery, when he saw a new neurologist, who diagnosed him with something else (Chiari Malformation), NOT hydrocephalus- his ventricles actually enlarged to compensate for excess fluid, and it was not sitting on his brain. I had taken him to the ER with vomiting, as they had told me that was one sign of increased pressure, when he saw that neuro, and if he hadn’t seen her, he would have had an unnecessary surgery and shunt. I implore you to get a second opinion. I wish you and your baby well, and please keep us updated.
I have hydrocephalus, first diagnosed when I was 9-10 months old. I’ve had several shunt revisions, the last when I was 11 or 12(I can’t remember) I’ve graduated high school and college. I have epilepsy that is likely caused by former shunt revisions, but I find seizures to be a small price to pay.
Thanks for all the responses and kind words, everybody.
Very frustrated. Nobody ever called to set the appointment, so I called the Dr.'s office to find out what was going on and never got a call back from them, either. So I have to wait until tomorrow to find out anything.
Thanks especially for your post, Broomstick, and you’re so right. All the websites talk about all these complications that can arrise from hydrocephalus, or from having the shunt, but they don’t say how likely those outcomes are, especially with early intervention. So far he seems perfectly normal–he’s met all his developmental milestones with no problems, seems happy and alert and everything, so if he does have it, seems it hasn’t done much damage yet.
And thank goodness, even if it is worse-case-scenario, it’s something that’s treatable. I know some parents get much worse news, and I can only be grateful that we’re not facing something like that.
Of course, it’s also a possiblity that all of this worry is for nothing. My dad (who Will greatly resembles) has kind of a big head. My sister pointed out this picture we have of him when he was about 3 or 4, and it’s true…his head is HUGE compared to his body in that pic. And he’s very normal–actually, he’s got much higher-than-average intelligence. So there’s always hoping that’s all it is with Will–he’s just got a big head to accomodate big brains!
I was a hydrocephalic baby. Now 42; no developmental or neurological abnormalities. Ivy League; government lawyer; happily married. Shunt is still in; hasn’t been checked in decades. XXL hat size, however.
Contradiction in terms noted without wisecrack ;).
But more seriously - Tom Tildrum would seem to be a pretty good example of how well someone with hydrocephalus can turn out. Times are different from 50ish years ago, for sure, when such a diagnosis would be a lot harder to overcome.
Scary though, I hope those doctors call you back SOONEST so you can get rolling with confirming the diagnosis and getting it treated.
Thanks again to everyone who’s responded, especially those of you who have experience with this. Glad to know there are a lot of success stories!
My mom has already decided that if he does need shunt surgery, we have to go to the Mayo Clinic to have it done. We’ll see. My husband and I have decided that he doesn’t have hydrocephalus, he’s just an evil-genius in waiting. Someday he’ll be some superhero’s arch nemesis, hatching evil plans to conquer the world with his oversized brain. (But he’ll always love his mother.)
